Thirty Years Ago Today
Thirty years ago my mom died. It’s mind-boggling to think about that. It’s mind-boggling to think that I’ve now lived far more of my life WITHOUT her then I have with her.
As some reading this will already know, my mom struggled with schizophrenia for most of her life. I suspect that she actually had early onset schizophrenia. And by “early onset,” I mean most likely in her teens. Am I sure? Nope, far from it. One of the tricks with mental illness is that it’s very hard to know when it starts. To put it another way, there’s a chance — probably a pretty good chance — that the mom I knew was never NOT struggling with schizophrenia. All of my memories of her are tinted with that disease, especially because she died so young (she was only 48 years old).
Since I don’t want to get maudlin about this (you don’t wanna read that and I sure as hell don’t want to write it), I thought I’d take a different angle on it this time. When my mom died, she was on welfare, struggling with intense poverty. There was no life insurance policy. No inheritance. No nothing. If an uncle of mine hadn’t stepped in, she would have had a pauper’s funeral1, Canadian-style. Since she didn’t have any assets, there wasn’t much “stuff” to inherit. I did, however, manage to take some things that were important to me. Some photos and other keepsakes. And her notes. She wrote a LOT of notes.
I think, but I’m not sure, that these notes were part of her therapy. I’ve never actually managed to sit down and read them all, mainly because they are actually very difficult to read. Part of that difficulty is emotional; these are written, after all, by someone I loved, someone I miss to this day, and someone who had a very unfair life. It’s MORE than that, though. They are really “stream of consciousness2”-type writing, very difficult to understand. These are also not a diary, at least not a diary that most people would write. Like a diary, my mom’s writings were not censored. Unlike a diary, she clearly showed at least some of them to her therapist, though I’m not sure exactly how they were used in her therapy.
What’s really hard about reading them, though, is that they are all over the place. Contradictory, nonsensical, rambly, very emotional, and so on. She wrote in cursive, and even her cursive would change depending on the day and her “mood.”
It’s actually difficult to try and describe these to you in words, so I’m going to do something I’ve never done before. I’m going to SHOW you some of them.
Some caveats first.
- The main reason I’ve never shared
them before is that they were very personal to my mom. And to me.
Sharing them felt like an intrusion…
or maybe even a violation of her privacy.
What’s changed with that? Two things:
The first is TIME; simply put, a lot of time has passed. I don’t feel as protective about her writing and her privacy as I once did.
The second thing is that schizophrenia and mental illness are still difficult to discuss openly in our society. Some would call this “stigma,” but I’m on the fence with that term. I’ve seen some push-back against it and I’ve seen push-back against that push-back. At any rate, SHOWING some of my mom’s writing might be useful to some. I hope so, anyway. - The other issue was that my mom, in
much of her writing, named people. Her parents primarily. Me. Her
therapist. And a few others here and there. I was concerned about
privacy issues, especially by posting anything like this online.
However, time has passed and
most of the people that my
mom addresses are now dead (my grandparents foremost amongst
them). I think (he says
cautiously) that I’m on firmer ground3
then I might have been once upon a time.
- The last major issue was trying to
put my mom’s writing in some type of chronological order. Simply
put, it’s impossible. I have a giant box of her writing as well as
a large
binder full of even more
of her writing.
With only a few exceptions, these are a jumble and it’s hard to
know when something was written. That’s made harder by both her
tone and the context of her writing. That’s a big part of why they
are so hard to read; there
is no page one. There is no beginning. There’s no “right place”
to start. I don’t even know when she started writing these in the
first place.
That said, there are a few helpful occurrences. First, she did date some things. Second, she occasionally organized them, even page numbering some groups of them, I presume to share with her therapist. That helps. And, of course, I only wanted to share some fragments of her writing, not try and share (let alone read) everything. Whew, boy. There’s no way that would be tenable.
Mixed with her writing are photographs of my mom. I took some time over the past few days to scan in some old photos of her that I have. Most of these are childhood photos. The sad reality is that after my parents split, when I was around 5 years old, all photos basically stopped. There are a couple of exceptions, but my mom’s deteriorating health (both mental and physical) combined with poverty meant that there just wasn’t “space” for photos. I don’t have photos of her as I grew up. I rarely have photos of myself from that era, too. So it goes.
The main reason to post photos of my mom, though, is to help document her life, to contrast the photos with her later writings, and to pose a question to everyone reading this. Can you tell when her schizophrenia started? Can you tell when the disease was really sinking its claws in? Was she 20? 14? 11? 7? 5?
What’s my point? Simply this. There’s no way to look at a photo of her and say, “yup, THERE it is. That’s schizophrenia right there. Got it!”
Our society is better (not great, but better) at dealing with physical illnesses, at least when compared to mental illnesses. When someone is having an “episode” in public, it can be scary. My mom’s episodes would certainly scare the hell out of me. Even now, all of these years later, I can still get uncomfortable thinking of them.
And yes, certainly some episodes can be physically violent. That’s terrifying, too. However, I find it important to remember that the perpetrator is also the victim, ravaged by a disease that we can’t see. Is it any wonder why people struggling with mental illness might turn to self-medicating to help? Especially if they are poor? Especially if they are victimized twice over; once by the disease itself and then again by the lack of societal support?
The late actor James Garner was in a 1986 film titled PROMISE. The film deals with two brothers. Bob (played by Garner) is the eldest and he winds up inheriting his mother’s estate after her death. He also inherits custody of his younger brother D.J. (played by James Woods). D.J. is, you guessed it, struggling with schizophrenia.
In his 2012 book THE GARNER FILES: A MEMOIR, co-written with Jon Winokur, Garner wrote the following:
Jimmy [Woods] researched the part of D.J. by spending time at a halfway house in Santa Monica called Step Up on Second… People in their late teens or early twenties — usually men, but it happens to women, too — can suddenly develop schizophrenia. Their odd behavior is often misinterpreted and they go undiagnosed. They self-medicate with alcohol and illegal drugs, and many wind up homeless, strung out, muttering to themselves…
I had no idea what schizophrenics have to endure. I learned that they inhabit a terrifying world of hallucinations and inner voices that seem completely real. Even when they’re well, they have the burden of knowing they can lose control in an instant. I’ve never forgotten what one of them said: “When I was awake, I seemed alone, even when I was with people. My life was narrated by thoughts that weren’t mine.”
… One day at Step Up on Second, Jimmy Woods met “Sam,” who gave a beautiful, eloquent description of what it’s like to be schizophrenic, Richard Friedenberg put it in the script:
D.J.: Do you want to know what it’s like, Bobby? It’s like, all the electric wires in the house are plugged into my brain. And every one has a different noise, so I can’t think. Some of the wires have voices in them and they tell me things like what to do and that people are watching me. I know there really aren’t any voices, but I feel that there are, and that I should listen to them or something will happen…
I can remember what I was like before. I was a class officer, I had friends. I was going to be an aeronautical engineer… I’ve never had a job. I’ve never owned a car. I’ve never lived alone. I’ve never made love to a woman. And I never will. That’s what it’s like. You should know. That’s why I’m a Hindu. Because maybe it’s true: Maybe people are born again. And if there is a God, maybe he’ll give me another chance. I believe that, because this can’t be all I get.
Accepting the Emmy for Best Teleplay, Richard Friedenberg said he hoped the film would help schizophrenics by calling attention to their plight. I’m sorry to say that twenty-five years later, schizophrenia is the worst mental health problem facing the nation. Asylums have been closed, and government spending on mental health has been cut to the bone. There are new medications for schizophrenia, but though more expensive, they’re not much more effective than the old ones. And there is still no cure.
Garner and Winokur wrote that in 2012. I’m writing this in the early fall of 2024. Has anything changed? From where I sit, no. In fact, in June 2022 the World Health Organization (WHO) published WORLD MENTAL HEALTH REPORT: TRANSFORMING MENTAL HEALTH FOR ALL. In it, they note the following:
Schizophrenia, which occurs in approximately 1 in 200 adults, is a primary concern: in its acute states it is the most impairing of all health conditions. People with schizophrenia or other severe mental health conditions die on average 10 to 20 years earlier than the general population, often of preventable physical diseases… The most impairing state across all health conditions… is acute schizophrenia, which is given a health state weight of 0.78. Put simply, this means an individual experiencing acute schizophrenia is expected to have only one fifth of the health and functioning of a fully healthy person.
They then added that “On average, countries dedicate less than 2% of their health care budgets to mental health.” What an unbelievable policy failure that is.
I’ve said it before and I’ll say it again. My mom had dreams. My mom had hopes for the future. She didn’t want to be sick. And she didn’t want to be dead at the age of 48.
In all of her writings, the most haunting line is this one:
Thirty years later, I still feel her death is a tragedy. I never got to know her as an adult. She never got to know me as an adult, either. She never got to meet my wife. She never got to meet my dogs or my cats. She never got to see me draw.
And I never got to see the things that she could do, either.
THAT is the awful part of her disease. It took her away. Yes, she had good days and bad days. It’s hard for me to remember or to know which good day was tied to medication and which bad day wasn’t. I suspect it was a mix, but I’ll never know. And as she got into her 40s, her physical health declined. That was mainly due to years of not taking care of herself. That wasn’t a conscious choice. I view it as an example of the spoon theory. She simply didn’t have the spoons for proper hygiene, exercise, nutrition, and so on. Sadly and inevitably, that caught up with her.
Since so much of her decline was tied to my own teenage years, I don’t have memories of my mom being healthy. I wish I did, but I don’t. I’m left, as always, with questions and “what ifs,” but no answers.
I wish that there had been better supports for her, in all senses of the word. And I dearly wish that other people who struggle with mental illness had better support, too. That my mom’s death, as sad as it was and is, might have led to change. But her death didn’t change anything. In fact, if she had lived, she would have been victimized by the so-called “Common Sense Revolution” that the Mike Harris government enacted in Ontario in 1995. These social service cuts eviscerated welfare income and other public health supports, as Scott Sørli so aptly demonstrated4. I do honestly feel that if my mom had somehow lived to experience those cuts, they would have killed her.
She was a deeply caring human being who was given a brutally unfair disease through no fault of her own. I am proud to have known her. And I miss her.
I’ll leave it with that. Please do look at her photos. Can you tell when her schizophrenia started?
Photos of my Mom
These are photos travelling back in time, from when my mom was pregnant with me to back when she was a baby herself.
Samples of my Mom’s Writing
A quick note: I’m not going to explain these or try and clarify them. I’m far happier to let them sit “as is.” But to clarify one point: I use the pen name “Von Allan” for all of my art-related work. My real name is Eric. So when you see that name in her writing, you know she’s referring to me.
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